New Plan, To Bring Ireland Up To Date

In Regulation & Government by poppy

Rare disease plan NI

The department of health issues Rare Disease plan

A national Rare disease plan was released today by the department of health, in order to bring Ireland up to date with the measures needed to cope with rare diseases. The plan is set to take effect over the next 4 years, and was brought about by recommendations from the European Council in 2009.

The plan proposes

  • A new clinical care programme specifically for the treatment of rare diseases.
  • The establishment of a dedicated national office for rare disease.
  • Residential care for children with rare diseases.
  • As well as the development of a rare disease research network to enhance the quality of research.

“Rare disease poses a particular challenge for a small country like Ireland”

Minister for Health James Reilly spoke out about the plan saying “Rare disease poses a particular challenge for a small country like Ireland” and that there is  a “scarcity of relevant knowledge and expertise” in order to “facilitate a swift diagnosis”. Reilly then went on to say that this plan must be viewed “as a good start, not as a good finish”.

But with a country that mostly relies on voluntary contributions to rare disease organisations, that don’t meet the criteria for funding, can they possibly improve their patient care so quickly?

The chair of the Special Needs Parents Association also called for more support and funding for small organisations working with patients of rare diseases.

The report covers 48 points in seven different areas. The areas include: Recognition of rare disease – Information and Research; Prevention, diagnosis and care; Enhancing access to appropriate drugs and technologies; Empowering, protecting and supporting rare disease patients and carers; Implementation, monitoring and review of the national rare disease plan.